Tuesday, April 26, 2016

The teeter totter of life...

Yesterdays blog rattled a few people, and if I'm honest it rattled me to write it. So how does one follow up such a raw blog...By coming back to the present. The now. It's coming back to the fact that for now Steve is alive and fighting; and while he's here, we have work to do. :)Obviously all of our futures are unknown, and ALS and it's nasty little curve balls are in the abyss of the unknown; it's a poignant reminder that all we have is this moment. I plan to make the most of every single moment I'm given.In life it's a balance of preparing for the future while staying present in the moment. This moment is scattered with things that happened in the past as well as things that have yet to happen. The reality of the future and the possibilities are there, but what's important is not letting them swallow the actual moment. As a kid I used to try to walk the teeter totter like a balance beam and when I would have it where I was in the middle and both sides were up and still; is that balance I'm looking for in life. Where you know at some point this is going to happen, because all this happened in the past; but you're so present that this very moment feels magical and it's all you focus on.That's my ultimate goal in life, which isn't always easy. Because sometimes the past or future are so huge they overshadow the now. Coming back from say the conversations I've had with Steve, about me having to realize that at some point yes he will be done, to then us truly living in the now; takes work.So how do we do it? To be honest that's when we reset with a meditation and a dance party. Yep both. After we shake off the harsh realities of ALS, it's not that we go into denial; it's that we learn to live fuller lives because of the facts. We cherish every single day as we all should (totally quoting Steve from our documentary, which have I mentioned comes out May 3 :)). It makes the moments much sweeter. So while yes I am constantly working to be strong enough to stand by Steve's every single choice he makes. RIGHT NOW I am going to soak up every single minute of his energy, of his love, of his inspiration, his wisdom, his beautiful mind; because this moment, today; he's choosing life---and for that I'm thankful. That's all that matters right now. Is the now. So for everyday I get I will count my blessings and soak it all up like a sponge, I will stand beside him whether I'm ready or not for the future, and I will still hold on to that hope; because it's all I can do.

2 comments:

It is hard to let them make the choices. every day is new and everyday the choice may change and we as the people who love them and care for them have to be flexible and handle a roller coaster of emotion. my partner has MS and is under Palliative care. he has a DNR order and a meddling mother. i just try to treat him like he isn't dying and have conversations and reminisce when needed. Its a hard balance between care giver and partner and i fight every day to know which I have to be. Love is what keeps me going, love is what keeps me strong and yes Hope is a variable.

It is hard to let them make the choices. every day is new and everyday the choice may change and we as the people who love them and care for them have to be flexible and handle a roller coaster of emotion. my partner has MS and is under Palliative care. he has a DNR order and a meddling mother. i just try to treat him like he isn't dying and have conversations and reminisce when needed. Its a hard balance between care giver and partner and i fight every day to know which I have to be. Love is what keeps me going, love is what keeps me strong and yes Hope is a variable.